Urgent fix for Carer Support needed2 min read
Important reforms for payments for caregivers of disabled children and youth have been halted. Samuel Murray, National Policy Coordinator CCS Disability Action discusses why this will leave many without adequate levels of support.
Like many I was disappointed, but unsurprised, at the proposals for cuts in disability support. What equally concerned me was confirmation in the related documents that the Carer Support reforms are on ice again (see page 2 here). These important reforms have been previously delayed, yet they are vital. Under the reforms disabled people and their whānau would receive their Carer Support payment as a once or twice yearly lump sum, which can then be used to purchase a wide variety of supports. They are also planning to remove the ridiculous ban on carers working, while using Carer Support. The reforms would be a significant improvement.
Why are these reforms so important?
First, they affect a large number of people. In September 2016, 18,331 people were allocated Carer Support (note I said allocated, fewer people can actually use Carer Support). To put that in perspective, only 33,804 people were allocated disability support services in 2016. So 54% of all people allocated disability support services were allocated Carer Support. Second, the way Carer Support is currently set up worsens inequalities between the carers of disabled people. This is because Carer Support only provides a subsidy towards hiring a relief carer.
This subsidy is paid at less than the minimum wage. As a result, carers either have to top up the amount with their own money or find people willing to provide support for less than the minimum wage. In other words, people need either good natural support networks or money. In 2016 research (by the excellent Donald Beasley Institute), 66% of carers of disabled people reported using their own financial resources to make up the difference between the Carer Support payment and the actual cost of respite. 22% of carers had spent more than $1,500 a year on respite. This is not an option for many carers.
What is the impact on disabled people?
We know that many disabled people and their whānau live in poverty. Disabled children are more likely to live in poverty and in sole parent families than non-disabled children. The folks who face the greatest barriers are likely to find Carer Support unusable. Fixing this should be a major priority, but it does not seem to be.
The Ministry of Health is often concerned about the affordability and financial sustainability of disability support services. Yet the current level of poverty and inequality amongst disabled people and their whānau is definitely not sustainable or defensible. Unfortunately, the government seldom considers the real human and societal costs of not providing adequate levels of support. Instead the government just sees the cost of providing support.